Father's Day

First of all, we just want to say "Happy Father's Day"!

I'm sure that being at the hospital did not make for the most exciting Father's Day that Chris has ever had. However, we did take him out for a special lunch in the cafeteria. To show him how much we love him, we went to the big cafeteria in the main hospital. What a lucky guy!

Really, we did have a great day, though. Kai's pain was well managed and he has been out and about today. He got to play in the playroom (I think he could play with the rice table for hours!), "walk" in the hallway, look out the telescope, and even head outside for a while. Fortunately, Kai has a patient and loving big brother who accompanied him on all of his adventures today. Sam is becoming very accomplished at maneuvering the IV pole and moving chest tubes! 

The only thing that we weren't planning on today was the removal of Kai's internal jugular line/central line. This, of course, is the IV line that was placed in the jugular vein in his neck. It needed to come out because of infection concerns. It was not a pretty process getting this out! He cried so hard that he eventually fell asleep...in the stroller, of course, since he refuses to sit in the hospital bed. 

I really think that he'll feel so much better not having these lines in his neck, but it does mean that he'll need to have meds given and blood taken differently from now on. As you can imagine, he's not really a fan of pokes, so this could get interesting!

On a totally different note...it's amazing how close to the doctors and nurses and child life specialists we've become through this journey. We're not necessarily surprised by this, since we are surrounded by incredibly knowledgeable, talented, and loving people. But, we have also become close to other kiddos here. We have two of the sweetest, cutest babies on either side of Kai's room! Sam and Kai have grown to love them so much...I think especially so because, unfortunately, neither one has family or support systems here to be with them at the hospital. To show the babes how much they are loved, Sam asked if he could be brought to the store to purchase toys for them...with his own money! How could we say no to that?!?

Here is what he came up with:

We are so proud of his big heart for these kiddos here! 

Shortly after we received Kai's referral and were starting to research, learn about, and plan for his health needs, we had someone ask us if we felt it was selfish to adopt a child with such significant health concerns; that it was not fair to Sam to put him through all of this. Yes, it is certainly hard to be a six years old and be at the hospital watching a sibling go through surgeries and treatments. But, it also teaches important life lessons. Sam has certainly shown that he is learning empathy and compassion and patience. We are so proud of how he is working on caring for others!

Rough Days

The last couple of days have been a little bit rough for Kai. He's dealing with some pressure issues in his heart. The left side of his heart still thinks that it needs to be working overtime! He is getting some treatment to attempt to relax the blood vessels in his left ventricle so it doesn't continue to work so hard. 

Since he's had a difficult couple of days, we thought we'd post some of the "fun" things that he's experienced...just to take our minds of how miserable he feels right now!

Meredith from Music Therapy has come down to sing to him a few times, which he LOVES. We are so thankful for all of the programs that they offer here!

Kai loved having Ms. Angel come to visit. We even got to see some of his silliness come out!

Kai got to get out of his room and head to Child Life to paint. It took 2 days for all of the paint to dry, but he is very proud of his multi-colored wooden elephant.

Tanya is Kai's favorite nurse. She is AMAZING! 

Our Make-A-Wish volunteers sent Kai a teddy bear. He loves it! Thank you Sue & Trista (and the entire Kimber family)!

He doesn't necessarily look thrilled in the pic, but he was excited to get outside! The courtyard here has tons of animals...he enjoys watching the chipmunks and rabbits!

PAWS was here yesterday. Unfortunately, Kai thought he was extremely scary...so no picture with him! Now that I see the picture, Sam doesn't seem to be impressed by him either! Chris and I had fun, though!

We appreciate all of your prayers and support during this journey. We're hoping for a better day today and progress to update you all on soon!

Saturday update

 This pair of jeans will never be the same after last night/today…I’m pretty sure they were vomited on about every 3 hours for the past 29 hours. I’m thinking that a trip to Gap outlet for a new pair will need to be in my future soon!

But, aside from being extremely nauseous, Kai had quite an uneventful day, medically speaking anyway. After having his lung drained of fluid, his oxygen levels have been relatively stable. In fact, everyone here can’t get over how well the surgery has worked and how much blood is now able to get to his lung to be oxygenated. With oxygen levels consistently in the 70s before, we were so used to seeing him always at least “dusky” that we are constantly amazed at how pink his skin, lips, and fingernails are now that his O2 saturation levels are in the 90s! 

I know he has a long road ahead of him, but as he continues to recover from surgery I’m excited that he will finally feel well. (Although, I have to admit that I’m a little nervous about how much energy he is going to have now that his little heart is repaired!)

Kai did get to have a few tubes removed today…his mediastinal chest tube and his pacing wires. His m.s. chest tube was no longer needed for drainage of blood and fluid from around his heart. He was not excited to have the tube removed…or, more likely, to have stitches…but we’re hopeful that being down to only a couple chest tubes will make moving around a bit easier.  After that came out we tried taking him down to the playroom for a while…the look on his face tells what he thought of that!

Despite the fact that he was less than thrilled to be moved from his room, we are so excited that he was even able to get up and be moved, since this is what he looked like yet on Thursday morning... 

We appreciate all of your thoughts and prayers through all of this!

Friday update

Here is an update that my mom shared on Facebook late last night:

Thanks so much for all the continued prayers for Kai. It has been a roller coaster of a week. Tuesday night and yesterday were rough. Just when you think he has turned the corner another crisis starts. I think he likes to keep everyone on their toes. His oxygen dropped in the 60's at one point and was very lethargic. We are blessed that he has a great medical team working for him and we continue to pray for answers and healing.

After going downhill yesterday afternoon/last night, he has made progress today (Friday). During the night, the staff here drained fluid from his lung to help with breathing. This has helped greatly with keeping his oxygen levels up. Since his heart and lung function was doing well this morning, he was able to get out of the bed for a short while. We got to carry him down to the playroom for a while, where he loved just sitting and watching Sam play with Matchbox cars. That movement took a lot of of his little body, so he's exhausted and nauseous, which is to be expected. He's also a bit crabby, so I'm glad that he's finally taking a nap!

This mama's heart just needs him to continue getting better...and no more setbacks!

So, hopefully I'll have some more good progress to report in the next few days! 

Finally...an update

When we arrived at U of M early Monday morning I was sure that I'd be able to give daily updates of Kai's progress. I figured that there would be a lot of "down time" and waiting that blogging would be no problem at all. It turns out that 2 year olds and open heart surgery are pretty busy and time consuming!

As many of you are already aware, Kai came out of surgery and into the PTCU (Pediatric Thoracic Cardiac Unit---the cardiac ICU) Monday night. All things considered, he did really well. The surgery appears to be successful---that blood is now able to get to the lung and become oxygenated! With missing anatomy and valves on the right side of his heart, this was a struggle before; so we're so thankful to see oxygen saturation levels that are no longer in the 70s!

Yesterday afternoon those oxygen levels began to drop. We had a small emergency---and found out that the doctors and nurses here can move very fast! Of course, as soon as I posted on Facebook that he was stable and his levels were coming back up where the doctors were comfortable with, they began to drop again. The surgeon came in a few minutes ago and said that this is something we'll be keeping a close eye on today. Another thing that we're watching closely are fluid levels. Kai has quite a bit of fluid around his heart and lung. He has almost 5 pounds of extra fluid in his little body right now. This is diminishing his lung function right now.  It also sounds like the catheter that he had taken out yesterday will be going back in sometime this morning. I have a feeling that he is not going to be happy about that! Actually, he hasn't been happy about anything lately. I can't really say I blame him, but last night was ROUGH ---a lot of screaming, thrashing around, etc. He definitely has a lot of "fight" in that little body!

I will do my best to give an update later today or tomorrow morning! Thanks for all of the prayers, emails, messages, etc! We definitely appreciate all of the support that Kai and our family has!

New Date

Just a really quick update...Kai's surgery will now be on Monday morning. It's difficult emotionally to now prepare for a new date, but we understand that it's what's best. So, look for more updates next week!

This week...

It's surgery week for this little guy.

Although he's had surgery twice since he's been home with us in November, this is the "big one". The one we've been working up to for the past 6 months. The one that he needs to keep his little body functioning. Our first experience with open heart surgery, as his others have been done in China.

Although we often hear how good he looks and that nobody would ever know something is wrong with him, his little heart cannot sustain any longer. Our reports from the doctors in China indicated that he had approximately 6 months left with his heart in its current condition. Well, those 6 months were up a month ago. 

We are constantly amazed at how happy, silly, and animated this little stinker is. What a joy... even when he's a tremendous crab in the morning (Sam has begun to refer to him as Grumpy Cat when he wakes up!). His crazy sense of humor, LOUD laughing, and love of teasing amazes us even more by the fact that he has a cough that won't go away, he's getting "puffy", and his oxygen sats are now constantly in the 70s. He has to feel miserable. But, he just keeps going because it would be horrible to miss out on something, you know?!? Especially if your big brother is doing it or it involves water of any kind.

Anyway, surgery is Friday.  I'll spare you all the medical terminology and lingo, but here is an incredibly brief description of Kai's main heart defects:

*Kai was born without a large section of the right side of his heart.
*Because he was born without this part of his heart, he has several valve defects. He is completely missing his pulmonary valve. His tricuspid valve is malformed and underdeveloped.
*His right pulmonary artery is twisted and kinked.
*He has a hole between the right and left atria.
*He has blood vessels growing from where his right ventricle should be and attaching to his coronary artery.

Our pre-op appointment on Friday revealed that his heart cath showed some things that are "alarming" and "of great concern" (as if the defects mentioned above weren't concerning enough!). We will be discussing this and what this means for Friday's surgery this Wednesday (June 3) at another pre-op appointment. If it seems appropriate, we'll update after that appointment. For now, we are going to be using our blog to share appointment, surgery, and recovery updates.

As you read through updates, we would appreciate if you would keep Kai, our family, and his amazing doctors in your thoughts and prayers!